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Back again, my caring load has now doubled

CaringCarerCasual Contributor18 Mar 2026, 2:19 pm AEDT

Back again, my caring load has now doubled

Hi everyone,

I joined these forums a couple of years ago when my son (multiple disabilities/mental health issues) was going through a rough patch. Used some of the resources for ongoing counselling, got some good advice here, and managed to get him stabilised.

All was well until about February of this year, when my husband developed severe anxiety and panic disorder due to tinnitus. Since then, it's been a never-ending parade of doctors, ED visits, specialists, and drama every. single. night. as he is unable to sleep for long periods of time. We are slowly slowwwly getting him set up with a proper medical team (after dealing with some exceptionally rude/uncaring doctors) and the proper medications (after going through loads of terrible side effects), but there are good days and bad days, and it feels like there are still far more bad days than good days right now.

Meanwhile, my son still has an intellectual disability and still needs help, too! I still have a full schedule supporting both him and his brother with their myriad of activities during the week.

We live in a regional area and don't have much family around; mine is overseas and my husband's is in the bigger city. My mother-in-law has moved in with us temporarily to help out with things, and that helps a great deal. But she's got her own life and will eventually have to get back to it... and I can't ask her to put it on hold for us, that's not fair. I thought my husband might want to return to the city with her as he may get better help there... but he refuses to leave without me and the kids. 😞

So this is where we are right now, and this is my life. I live in hell.

Before anyone asks, yes, I have hobbies! I have things I love to do! But now, I've got no energy, because it's all sapped up by caring for my household. I've tried to do what I can, especially with asking for others to help with errands and giving rides to my kids. It sure doesn't help that our mortgage payment has gone up, petrol prices are sky high, and both of us are out of work so hiring this stuff out and getting rides is super expensive.

But you know what the worst part is? It's not being able to have a partner right now. I used to be able to talk to my husband about things and we would lean on each other. Now I feel like I've lost my best friend, and that just sucks.

3 replies

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In response to: Back again, my caring load has now doubled

D4DolphinModerator18 Mar 2026, 2:54 pm AEDT

Re: Back again, my caring load has now doubled

It's good to hear from you, @CaringCarer. This last month must've been super-hard, on top of the full carer load you've had over the years. It's good that you find time to connect with us here - express those feelings - not just bottle 'em up.

Sounds like night-time's not as restful as it should be. Are you managing to get at least a few hours of solid sleep at night? 🛏️

In response to: Back again, my caring load has now doubled

MatchaToadPeer Guide18 Mar 2026, 3:27 pm AEDT

Re: Back again, my caring load has now doubled

Hey @CaringCarer

This is an incredibly heavy load to carry. To go from a period of stability to a doubled caring role, where both your child and your husband need intensive support, is enough to make anyone feel like they are living in a "hell" of exhaustion.

It is particularly painful to feel like you've lost your partner to their illness. When your "best friend" becomes the person you have to manage and navigate medical systems for, the loneliness of that shift is profound. You are not just tired from physical work; you are grieving the relationship you once had.

As a volunteer here and a carer myself, managing my own mental health and disabilities, on top of my partner's, I want to acknowledge that you are doing an incredibly heroic and selfless job in a regional area with such limited resources. I did want to also share a few things that may help ease the pressure:

Arafmi Queensland: While this is a QLD organisation, it runs online events such as support groups, workshops, and training for those living inside and outside the state. I believe they do have a specific online support group for carers of a spouse/partner. Talking to others who have "lost" their partner to mental health struggles and disabilities can help with that specific sense of isolation. It's a space where you can be seen as a partner, not just a carer.
Carer Gateway: Since your load has doubled, I recommend calling your local Carer Gateway provider to discuss your caring role and support needs. They can provide tailored support packages that sometimes include one-off funding for things like cleaning, transport for your kids' activities, or even fuel vouchers.
Ask Izzy: is another service I highly recommend, it connects people in need of housing, food, money help, counselling and much more. It is free and anonymous. And if you're on a Telstra or Vodafone mobile network, you can still use Ask Izzy on your phone even if you don't have credit or access to WIFI.

I also want to say that it is okay to accept the help you have right now without guilt. If your husband refuses to leave without you, perhaps the conversation can shift to "planned respite." There are such things as Carer retreats, which Carer Gateway, for example, could point you in the direction of. Even just 48 hours away from the "drama" of the house could give you the reset you need to keep going.

You are right, though, this is too much for a parent to bear alone. You've already done the right thing by asking for rides and errands, and even coming on here for support; please don't stop asking for help! These services and organisations want to help!

In response to: Back again, my caring load has now doubled

SmilingGeckoSenior Contributor18 Mar 2026, 4:55 pm AEDT

Re: Back again, my caring load has now doubled

@CaringCarer Theres new groundbreaking health discoveries to do with tinnitus. Its largely due to epstein barr viruses (EBV) in the ear. EBV can target the nerves of the inner ear labyrinth, and the resulting inflammation and vibration can lead to ringing sensations in the ear. If you can get the EBV under control the ringing should stop.

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